I haven’t written for a while and that is because things were just too bleak. I was hesitant to write and just complain about our situation. Without having anything positive to balance it with I didn’t want to just dump all the bad stuff. Here is a quick summary of where things stand right now.
We did our 3rd IVIG 21 days ago. We did the PEX on Nov 2-6th. Our ped and John and I feel that somehow the PEX actually harmed A. I’m not sure how this is possible because it was supposed to be curative for her. But somehow it seemed to have set her back even further than before the procedure. Let’s just say that was not good.
After returning from DC we met with an immunologist who was both nice and very knowledgeable. He ruled out CNS Lupus and instead said that A has an inflammatory autoimmune disease. Because her symptoms don’t fit neatly with such diseases as CNS Lupus or others he is calling her disease unnamed. Just an inflammatory autoimmune disease. He said it is not uncommon to have an autoimmune disease without a name. He also said he isn’t surprised that the PEX didn’t work. He feels that her issues might go deeper than the level the PEX removed. This is an issue we would not have discovered if we hadn’t actually done the PEX. He agreed with our plan to do monthly IVIGs. He feels we will need to do them for between 1-5 years monthly.
So, we did the 3rd one and we saw some pretty instant results. But then things went back to bad. And they stayed there. John and I were pretty heartbroken. Things were very bleak at our house. John and I were feeling like the IVIG had failed just as the PEX had. We were not sure what the plan was going to be in order to live with this situation long term. When things are bad it is very hard to sustain family life here.
But then something just simply changed and A got a tiny bit better. She is happier, she is singing, she is able to deal with life in a much better way. We still have a life that most people would not know what to make of, but for us it is very tolerable. And it came just in time. John and I can now say that this IVIG did have an impact. And that is good because we return to the hospital a week from today for the next infusion. We had to make a decision on moving forward and without this change in A it was going to be difficult to subject her to another stay. However, we now know it will be the right move.